From Gael Hannan:  This week’s blog is an interesting and emotional reflection written for a class assignment by Jacqueline Arsenault, a Speech-Language Pathology Masters student at the University of Toronto. It was partly inspired by my workshop on bluffing, The Masks of Hearing Loss (Bluffing 101), which I had presented to  her Aural Rehabilitation class, a course taught by my friend Dr. Joanne Deluzio. This heartfelt and pain-filled reflection is a common scenario in families affected by hearing loss, and I’m grateful to Jacqueline for her courage in sharing this story of her family.

 

Am I Responsible for My Mother-in-Law’s Communication?

By Jacqueline Arsenault

 

My mother-in-law has hearing loss. Either at birth or from a young age, she had total deafness in her right ear and hearing loss in her left ear. The hearing in her left ear progressively worsened to a profound sensorineural hearing loss and, four years ago, she made the difficult decision to get a cochlear implant (the right ear was not eligible for implantation).

I have a confession to make, though. My mother-in-law frustrates me.  She upsets me and she angers me.

My mother-in-law peeves me when she bangs cupboards and dishes and doors. This was especially exasperating when I was trying to get my babies to sleep. Their eyes would finally close, and then, BANG! She irks me when she doesn’t laugh when I display my brilliant sense of humor. She doesn’t even smile.

Now, I finally understand that she doesn’t do these things because she’s a cruel woman. I now know this is all linked to her hearing loss. I realize now that she can’t hear those banging sounds. And humor is difficult to grasp when you can’t hear all the words, sounds, nuances, and social cues.

But what frustrates me the most is that our relationship is stifled by her bluffing, that she looks away when I am talking to her, and that she looks to her husband immediately for clarification if she doesn’t understand me. We live 7½ hours apart and yet, when we are visiting together, she invariably closes herself off from us by picking up a book rather than trying to talk with the family.

It is upsetting that she no longer attends church, weddings, or larger family gatherings because she can’t understand the priest, she can’t talk to anyone, and she can’t enjoy the music.

What about trying an FM system? What about reconnecting with loved ones that are rarely seen? What about finding different ways to communicate – with pen and paper or technology? She often talks about others and how baffled she is that “everyone knows that I have hearing loss, but no one changes anything or helps me.” My husband and I try to sympathize, but also tell her she needs to remind people, tell them how to communicate differently with her. She needs to advocate for herself.  It’s terrible that this is an ongoing effort for her, but her disability is not obvious to everyone, and it is not at the top of everyone’s mind. When people talk to her, they can’t always be sure that she has heard them, or that she cares to hear what they have to say.

We absolutely should be aware of how we communicate when we are with her, but is it our job to always check that she has understood us? I don’t think so; she  needs to help us too.

I am also saddened that her husband deprives himself of traveling, or going on hunting or fishing trips because my mother-in-law is so dependent on him. She simply can’t be alone for any length of time. It might be possible for him to go away sometimes if the house were equipped with a Shake-Awake (vibrating alarm clock), a visual smoke/CO2 alarm, and a means for her to use the telephone. My husband and I have talked to his parents about installing these devices and perhaps using a TTY service. They feign interest and vaguely say that they will look into it. It’s devastating. And worrisome. And maddening. What could be more important than taking advantage of these life-saving technologies?

While I’m ashamed that I am not more sympathetic to her self-pity, it’s also hurtful when she says that the only people who “get her” are her daughter-in-law (the other one) and her niece-in-law. It is heartbreaking that despite being told by her doctors that the cochlear implant would not enable her to have typical hearing, she is disappointed that the operation wasn’t a miracle for her, as it had been for other recipients she talked to. She was told  her hearing would likely improve with a cochlear implant, and it did. But the implant causes her discomfort, she hears echoing sounds, music has lost all meaning for her, and she doesn’t have that “golden ring” of natural hearing.

I sincerely feel badly that the outcome wasn’t what she wished for. It is sad when she asks us to pray that her cochlear implant will miraculously get better. I tell her that I will pray for her, but I will also pray that she embraces the improvement in hearing that the implant has given her, and that she finds a way to cope and work through all of the difficulties.

I wonder how different my connection with my mother-in-law would be if I had been better educated on hearing loss and how to communicate better with those with hearing loss when I was younger. I love my mother-in-law, and I hope to have a meaningful and deep relationship with her someday. I hope  she will help me, and others, to communicate better with her. I hope that she will recognize all the positives in her life, instead of concentrating on what she doesn’t have.

During a talk the other day, Gael Hannan said something that really struck me: “Some people let hearing loss define them.”  I see this in my mother-in-law, and I hope that she can break out of it and participate more fully in life.

 

11 Responses to Am I Responsible for My Mother-in-Law’s Communication?

  1. jennifer gibson says:

    While I understand the anger, confusion and frustration dealing with someone who has a hearing loss, you need to remember that it’s not their fault that they are unable to hear. They may have other limitations or issues that extend beyond their initial hearing loss such as depression which is a common factor associated with it.

    I have met many people with a hearing loss, some embrace it fully and do everything in their power to make their world as accessible as possible. I have also met many others who are too shy or extremely embarrassed to utilize equipment that would make it obvious that they have a “handicap”. Maybe it’s due to stubbornness? Or they simply cannot afford to buy additional equipment and are embarrassed about it.

    There are also numerous other factors that come into play that can make it an isolating lifestyle for people with a hearing loss such as not being able to attend social events. That’s completely understandable since it’s nearly impossible to follow conversations in noisy and distraction venues, I’m usually exhausted after an hour of trying to lipread and make sense of what is being said to me. And you know what? I’m lucky if I understood half of what was spoken. By the way, most of the time I miss jokes. It doesn’t mean that I’m stupid or too slow to figure it out, I simply missed the cue or punchline. It takes time for me to hear the information through my hearing aids, process it and make sense of it then come up with an appropriate response.
    Since I wasn’t born with normal hearing, I never acquired the proper auditory skills to quickly hear and understand speech. I don’t follow conversations at the same pace as everyone else.

    Most churches in my area, which is a small rural community, do not provide any means of accessibility for my severe to profound hearing loss which prevents me from attending their services.

    Devices like TTY’s are pretty much obsolete these days due to this fascinating technology called the “internet”. It’s easier and faster to text or email someone.

    FM systems are not cheap and when they do break, they are expensive to repair. They are limited in terms of distance even across a room since speech will fade or there will be static. The FM’s also do not function well in the vicinity of computers, especially a room full of them such as a classroom.

    In regards to Cochlear Implants, it does not work on everyone. They have been known to malfunction, cause severe pain, and are notoriously well known for having horrible music programs. Not everyone is the proper candidate for a CI and, depending on the nature of their hearing loss, it may not work. Unfortunately that doesn’t become apparent until after it has been implanted. They also take time, sometimes months or even a year, to fully adapt to the new sounds. That takes an enormous toll on the body and can be an extremely stressful experience.

    It’s not until you lose your hearing or wear hearing aids on a daily basis, that you fully realize the difficulties of having a hearing loss particularly in a very social world. So many people forget that we don’t function at the same speed as everyone else around us. Some of us can’t afford the necessary equipment. There are many different brands of hearings aids and some devices are not compatible with them. We don’t pity ourselves. We do the best we can under the circumstances and work hard like everyone else. In most cases, we often are working two or three times harder than others just to keep up.

    Quite frankly, I’m appalled at the lack of compassion and understanding displayed towards the mother-in-law. My suggestion? Go see a therapist and learn the meaning of the word “sympathy” and grow the hell up.

  2. Jackie says:

    I just want to share with you that we’ve been visiting with our family since Tuesday, and my mother-in-law is interested in a few new things, like an FM system and a tablet PC. She also got some paper and a pen out to help aid some communication the other day. We have not seen her since January, so these gains are extremely exciting for us to see. Exciting for her too I think! She seems genuinely interested in making some positive changes. Just wanted to share that with you.

    Thank you to the people that posted their thoughts here, your comments and suggestions have really touched me.

    Thanks again for sharing our story Gael.

    • Marianne Keyes says:

      This is wonderful news! I have a Widex FM system and have computer experience and can give advice as needed. I do find that Apple facetime is easier to hear with than Skype. I have an ipad as well as pc. Let me lnow if you need assistance!

    • Alice Adams says:

      This sounds wonderful. I’m so glad I came back to follow up on this article. Here’s wishing for brighter and happier days for all of you. Things do seem to be improving.

      Alice

  3. Marianne Keyes says:

    Boy, this is a tough one.
    I, too have been just like your mother-in-law. Hearing loss is scary and exhausting. I too no longer attend Church or limit large family gatherings but not because I don’t want to go. I have a great hearing aid, with FM and T-coil and my Church doesn’t have that technology. I have found that most Churches in my area don’t. I no longer enjoy music, not because I don’t want to, but because my ears no longer process music in the same way. What is beautiful music to others is like fingernails on blackboards to me. I limit large family gatherings because I also have severe tinnitus, and noisy situations are not only hard to hear in but they make the tinnitus temporarily worse. And, sometimes, I rely on my husband and daughter to translate because I’m exhausted from trying to hear all day. I’m not all that comfortable being alone overnight in the house either, and that might not just be a hearing loss issue. And, it gets tiresome to keep reminding people that you can’t hear, even when it’s family or your best friends, who should ‘get it’ by now.
    All that being said, I do agree that hearing loss shouldn’t define us. I constantly try to be an advocate for better communication, better technology among other things.
    Here are my small suggestions that may help in your situation: offer to stay overnight so that father-in-law can go on his fishing trip; learn basic American Sign Language, with your children and with your mother-in-law so that you can communicate; make sure you and your children are communicating directly – face to face, slowly, clearly and one at a time; have smaller family gatherings or accommodate her needs – smaller rooms, less people, use tablecloths, don’t play background music,etc. Maybe just ask her how you and your family can help her hear a little bit better?
    Good luck, and if mother-in-law lives in Ottawa, I’d be glad to connect with her too. We can learn a lot from each other.
    Thanks Gael and Jacqueline for starting this conversation.

  4. Peggy Ellertsen says:

    Hearing loss in and of itself is not a handicap. The functional consequences of hearing loss – their ability to progressively blindside a person – embody the handicap of hearing loss.

    I believe that two ingredients are essential for improving the functioning of persons whose hearing loss results in handicap. The first is the opportunity to tell one’s personal story about the feelings related to isolation and lonliness (even and especially in a room filled with hearing people;) specific factors that interrupt communication, (i.e., not just the hearing loss, but factors related to communication style of the speaker, acoustic environment, etc.); and factors that have resulted in satisfactory communication for the h.o.h. person. The second essential ingredient for improved functioning includes a comprehensive, patient-centered approach to hearing health care, one that includes coaching and practice in the use of communication strategies and self-advocating behaviors; coaching in the adaptation of a variety of assistive listening devices; group work with family and, importantly, with other people with hearing loss; and an annual needs assessment with the hearing healthcare professional.

    I believe that without these two components, persons with hearing loss – and their families – are left to their own, often disparate devices to figure out what should be done.

  5. Barbara Johnson says:

    Dear Jacqueline.
    As a relatively new CI user who has also embraced hearing assistive technology this post interests me. I understand frustration on both sides. And I can’t help thinking that in spite of how it may appear your mother in law is not happy missing out.
    Rather than tell she and her husband what they “should” do, why don’t you show them. You don’t say how this couple feels about technology but many are easily overwhelmed by it. Buy them a bed shaker or fm system and help them learn how to use it. They just may surprise you if given the chance.
    Barbara

  6. Michele Linder says:

    No, you are not responsible for your Mother-in-law’s communication. She is responsible for figuring out her hearing loss for herself, but it sounds like she’s content to play the victim and be over-dependent on her husband and family. It also sounds like the Father-in-law is enabling the MIL to depend on him too much (maybe they are of the generation where it’s acceptable for the wife to lean on her man too much and for him to come to her aid even when it’s not needed), and I’m wondering if the two other people who “get her” are overcompensating? Many times family members think they are being kind and truly want to help, but what they don’t realize is that help and kindness in excess is not a good thing when it encourages the recipient to over-depend on others and allows them to avoid dealing with things that need their attention alone.

    Hearing loss is hard and it’s scary. It’s also a lot of work, and the work is something no one can do for you. You have to choose to be independent, or not. It sounds like the MIL is choosing to be over-dependent. I think she needs to connect with others who have hearing loss, and she needs to realize cochlear implants and the other skills required to live fully are a lot of work.

    I do hope this family can all sit down and talk about what’s good for the Mother-in-law without her being there, and then when a consensus is reached on what needs to change, they all need to confront the MIL to encourage her to connect with others with hearing loss, deafness, and cochlear implants, and to work to be more independent. Not because her family doesn’t want to help her, but because it grieves them to see her checking out of life. ~~Michele

  7. Alice Adams says:

    I read this with a great deal of interest. It was thought provoking in so many ways because I felt those comments could have been said about me at times. Hearing loss is a very difficult disability. It separates you from life events that you grieve for. In this case – I feel that the communications barrier is coming from both sides. The daughter-in-law does not state that she has taken the time to bring these issues tactfully to her mother-inl-law’s attention. The mother-in-law has apparently not tried to help herself. I am sure she is not happy to be missing out on the most important events in her life. I doubt that she’s trying to offend her family and friends. Using the very devices and assistance the daughter-in-law has mentioned, a special experience could be shared. Help “mom” get the devices she needs. Help her learn how to use them. Spend some time with her. Let the whole family be involved. Don’t let precious time pass without healing this gap between “mom” and the family. My guess is that she will welcome the inclusion.

  8. Caroline Gatchalian says:

    I don’t know what to feel and for whom I feel for! This is such a powerful story because Jacqueline represents the people we, as hard of hearing/deaf, desire in our lives. She empathizes with her mother-in-law’s hearing loss, aware of her communication needs, and is genuinely proactive in her wish to hear better. But the other half of the equation is missing! The answer to the problem will never be solved I’m afraid without the participation, input, and contribution from the mother-in-law. But isn’t the mother-in-law’s lack of self-advocacy a recurring problem that is too often relatable by us here?

    Jacqueline, do know that your efforts are appreciated and valued because you are role-modeling how to speak to the hoh/deaf. So thank you for this! I pray that your mother-in-law will find a hard of hearing peer that will role-model to her how to communicate effectively with you and your family.

    Sincerely,
    Caroline

    PS. If she were in Vancouver, I’d want to meet her and just make a connection, you know? A connection…